AB1492 FAMILIAL MEDITERRANEAN FEVER IN GERMANY- DOES NATIONAL ORIGIN MATTER?
Authors: A. Pankow, A. D. Wagner, T. Kubacki, A. Palmowski, K. Voigt, I. Kötter, M. Krusche
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Familial Mediterranean fever (FMF) is a rare hereditary, autoinflammatory disease that is characterised by recurrent episodes of fever, increased inflammatory parameters and abdominal and thoracic pain attacks. Germany is a low- prevalence country with approximately 5800 affected patients [1]. Due to the rarity of the disease, diagnosis is difficult and time-consuming [2]. Patients often experience a long diagnostic odyssey ensuing further physical and socioeconomic damage. <h3>Objectives</h3> This study aimed to investigate demographical, socioeconomic and disease-associated data, in patients with FMF in a low-incidence country like Germany. <h3>Methods</h3> At three German tertiary centres, adult FMF patients were included in the study. Patients were asked to report data on demographic background, disease symptoms and duration, as well as the socio-economic impact of diagnostic and surgical interventions. <h3>Results</h3> We included 84 adult patients (female/male 35/49), the median age was 33 years (min 18- max 94) with the confirmed diagnosis of FMF. Demographic analysis showed that 52% of FMF patients were not born in Germany (country distribution see <b>Figure 1).</b> The mean age between symptom onset and diagnosis was 4 years (0-35) for patients born in Germany and 9 years (0-65) for patients not born in Germany. Furthermore, non-German-born patients reported more disease symptoms (see <b>Table 1</b>). In both groups, the number of prior diagnostic procedures and abdominal surgeries was high (53% in German FMF patients, 56% in Non-German FMF patients). Socioeconomic effects of the disease were similar in both groups: 20% of the patients born in Germany and 22% of the non-German-born patients reported that they terminated their academic education due to the disease. Furthermore, 30% of the patients born in Germany and 27% of the patients not born in Germany reported that they lost their job due to disease related problems. <h3>Conclusion</h3> Our data suggest that patient care for FMF in Germany is currently not optimal. A large number of patients continue to undergo a long diagnostic odyssey with unnecessary diagnostic procedures or surgeries and also experience negative effects on their education and professional careers. Furthermore, there are differences between patients born in Germany and those not born in Germany with the latter being even more negatively affected. <h3>References</h3> [1]Foeldvari I et al. Arthritis Rheumatol., 2018 [2]Chuamanochan et al. World Allergy Organization Journal, 2019 <h3>Acknowledgements</h3> This study was financially supported by Sobi. <h3>Disclosure of Interests</h3> Anne Pankow Speakers bureau: Sobi, Novartis, Grant/research support from: Sobi, Novartis, Annette D. Wagner: None declared, Torsten Kubacki Speakers bureau: Novartis, Andriko Palmowski: None declared, Karen Voigt Speakers bureau: Novartis, Ina Kötter Speakers bureau: Novartis, Sobi, Consultant of: Novartis, Sobi, Martin Krusche Speakers bureau: Sobi, Novartis, Consultant of: Sobi, Novartis, Grant/research support from: Sobi, Novartis,